DSM-5: Living Document or Dead on Arrival?

DSM-5: Living Document or Dead on Arrival?

News flash From Medscape Medical News—“APA Answers DSM-5 Critics”—a defense of DSM-5 offered by Darrel A. Regier, MD, vice-chair of the DSM-5 Task Force. Wonderful news that the American Psychiatric Association (APA) is attempting to address the fact that DSM-5 alarms many of its potential users—it is long past time for an open dialog.

Unfortunately, however, Dr Regier dodges the concerns that must be addressed if DSM-5 is to become a safe and credible document. Five simple questions were previously posed to APA with a request for straight answers:

1) Why is APA not willing to have an independent scientific review of questionable DSM-5 proposals—especially since its own internal and confidential review process has been so badly discredited?

2) Since the DSM-5 suggestions will all broaden the definition of mental disorder, why should we not worry about diagnostic inflation and the massive mislabeling of normal people as mentally ill?

4) Why should we not worry about the unintended forensic complications of a sloppily written DSM-5 containing suggestions that are obvious targets for forensic misuse?

5) Won’t the many small, needless, and arbitrary changes in DSM-5 complicate future research efforts and make impossible the interpretation of data collected before versus after DSM-5?

None of the questions gets anything approaching an answer. Instead, Dr Regier tells us, “We hear your concerns and are aware of those from others in the mental health field, and take them under serious consideration in our deliberations.” But if APA really heard our concerns, there would be an immediate independent scientific review to allay them. What possible excuse is there for not taking the one obvious step that will make DSM-5 credible?

Dr Regier assures us not to worry about the radical DSM-5 suggestions, promising “a rigorous test-retest design to assess the reliability and clinical utility of proposed criteria . . . in 11 academic field trial centers.” He adds, “The full range of disorders will be assessed in this field trial and the findings will contribute to the final decisions about the diagnoses.”

But, simply stated, the field trials are useless for DSM-5 decision-making. They failed to ask and therefore cannot begin to answer the only really important question—is DSM-5 so overly inclusive that it will mislabel as mentally ill millions of people with problems that are just part of the human condition. And experience teaches us that results generated in academic centers often have nothing at all to do with how DSM is actually used (and often misused) in the real world.

Dr Regier goes on to admit the obvious—that the new DSM-5 proposals are not based on anything resembling adequate research: “However, a lot of this has not been tested as well as we would like.” “Some of these fixes are not as well studied as others and we recognize that. But we can’t move forward without some of these put into practice. So we think this is a much more testable set of scientific hypotheses.” “And that’s what the DSM is—a set of scientific hypotheses that are intended to be tested and disproved if the evidence isn’t found to support them.”

There could not be more eloquent testimony to exactly where DSM-5 has gone badly and dangerously off the tracks. DSM-5 most definitely should not harbor the ambition of providing a set of scientific hypotheses created by and for researchers to encourage further testing of their pet ideas. DSM-5 is not at all meant to be a program for future research—it is instead a guide to current clinical practice that will have a crucial impact on the lives of the people misdiagnosed by the DSM-5 hypotheses. They will often be hurt—sometimes badly hurt—by receiving unnecessary medicine and unnecessary stigma.

Recent experience proves that children will be particularly vulnerable to the mislabeling that will follow this exercise in DSM-5 “hypotheses testing,” to say nothing of the misallocation of resources away from the truly ill (who desperately need them) and toward the worried well (who often will be more harmed than helped). There is no conceivable excuse for conducting what amounts to an uncontrolled public health experiment just so the DSM-5 researchers can further the testing of their pet ideas.

Dr Regier is fond of calling DSM-5 a “living document that can be revised regularly.” He states, “We’re thinking of having a DSM-5.1, DSM-5.2, etc.” The implication of this “living document” concept is chillingly out of touch with the perils of clinical reality. Although he doesn’t come right out and say it, Dr Regier seems to be reassuring us with something like, “Don’t you worry if our untested hypotheses get it wrong now, we can always fix it up later.” This blithely ignores the needless and sometimes dangerous medication side effects and stigma to be endured by those who are mislabeled by the premature and untested DSM-5 hypotheses. The makers of DSM-5 have forgotten the most important injunction in medicine—the Hippocratic First Do No Harm.

What needs to be done? In the short term, APA has only 2 choices—submit DSM-5 to external review or drop the most dangerous suggestions. Otherwise DSM-5 risks not being trusted and not being used by mental health clinicians.

For the future, the lesson couldn’t be clearer—never again allow researchers the freedom to turn DSM into a plaything for their pet “hypotheses.” The DSM’s are not meant to be a casually undertaken experiment. They have become far too important an influence on clinical practice and public health policy. DSM-5’s radical ambitions have failed—it attempted to fly too high and now must come back to earth.